[labladyParticipant]

My significant other was diagnosed with stage 3 MM month ago with additional spine and rib fractures. Spent a month in hospital and is currently coming to end of first cycle DVTD and is confined to barracks as has had to retire from his manual job which was full time. I’m used to living my own life during the week but now he’s around 24/7 it’s driving me mad i feel like I have no privacy or time for me or my life anymore and I’ve just become his slave. I feel guilty for feeling this way 😕 we’ve been together over 40yrs and I feel that just as we were starting to plan our bucket list trips to celebrate major life milestones we’ve had the rug pulled from under us.
Sorry to whinge I know I sound pathetic and self centred but I feel like I’ve lost my life.

[tmcintyreParticipant]

Hi lablady,

It really does hit the partner as much as the patient. Your life revolves around appointments and treatment.

When my husband was first diagnosed he was able to continue working but the following year, after his SCT he could only manage part time and then had to take ill health retirement. He was never very hands on at home but he suddenly became very dependent on me.

I understand that 8 years of treatment is debilitating for him (he’s not achieved remission) but he won’t even make a cup of tea although he can get himself a beer from the fridge!

I do wonder sometimes when people talk about the burst of energy they get on steroids days and they manage to tackle the ironing or decorate a room and I think why doesn’t my husband do anything.

I admit I do feel resentment sometimes and then I feel guilty.

We have to remember that we have a life too and take enjoyment from the little things. For me, it’s the daily dog walk, spending time with the grandchildren. Last year I had two little two night camping trips with my daughter and granddaughter which I’m hoping to do again this year. My husband didn’t do so well without me and my other daughter had to keep him an eye on him and I had to keep phoning him to check he was staying hydrated. But the pleasure and relaxation I got from those trips was immense. I don’t feel guilty that I had four days away from him.

Try to think positively. Your life is not what you were hoping for so you need to find another way to find enjoyment .

All the best
Teresa

[jb2514Participant]

Hi I am also the wife of a husband with MM and married for over 40 years and was just retired when myeloma hit!
I can totally agree with all you have both said jusT that I’ve never been bold enuf to say it.
My husband buried his head in the sand from day 1 and left me to navigate us around a cancer we had never heard of before- he went blindly into a stem cell transplant in just the same manner – which while I never underestimated it left me sitting on the sidelines wondering if I could cope with much more.
I agree there is a genuine need as a partner to step away at times and take a bit of time out. I’ve joined some clubs etc to have that space.
We are not selfish we are humans- I will tell everyone I’m a wife not a carer – but I care.
Thank you for being honest about how you feel – it’s made me feel better

Elaine

[labladyParticipant]

Thank you Teresa and Elaine for your replies they gave me heart that its not just me, I think both of you have similar husbands to me, mine wouldn’t look at any of the literature the hospital gave us and I mentioned the stem cell op and he said don’t want to know so I suspect that will be all on me too, it’s certainly going to be a marathon not a sprint. Take care both of you and feel free to vent here, I think we all understand and can help each other xx💕

[rabbitParticipant]

Hi all,

Firstly and most importantly, I want to thank you all for your caring. Us patients would struggle so much without your love and help.

It is damned tough for carers to cope. It can also be difficult to have somewhere to complain and let off steam.

From the time I was diagnosed, I encouraged my family to get on with their lives: work, studying, holidays, seeing friends, whatever.

I do have the advantage of having three adult ‘kids’ as well as a wife, all of whom have helped me enormously. Could any of you lean on family/friends for extra help?

In terms of some of us patients burying our heads in the sand on future treatments such as an SCT, that has never been my approach. I have detailed technical discussions with my consultant on current and future treatments, blood test results etc, having done a lot of reading up. However, I did blinker myself by not going on forums like this one until I was in remission. It was just too much to cope with (for example reading about other patients’ horrible side effects) at that stage.

I can theeefore understand othrr patients blinkering themselves in terms of future treatment. It can just be too much to emotionally deal with.

Steroids may give energy boosts for some patients but for me they just cause exhaustion from lack of sleep 😀. I agree that if you can get a beer, you can make a cup of tea!

Regards
Rabbit

[tmcintyreParticipant]

Hi,

My husband reacted to King Charles’s statement about cancer, saying he knows how much I support him.

To be honest the Myeloma treatment, appointments, prescriptions, are all manageable. It’s the diabetes that causes the most problems as he seems unable to accept that it’s important and as much as I try to give us a healthy diet he fights against it. We went on a course a few years ago when he was first diagnosed with diabetes and I’ve asked him to have another look at it to make life easier.

We shall see.

[labladyParticipant]

Hi all
Just an update, second week of round 2 of DVTD although hubby is feeling grotty and I’m still getting some backlash, things have improved. He’s much more accepting of the situation having had consultation with his specialist nurse and the super helpful booklets from Myeloma UK (he prefers printed to online he doesn’t do tech) we’re both more positive and trying to look to the future and remission at the end which will hopefully mean we can pick up our lives again.
One of the annoying things I’ve come across is that when people know about our situation they ask if I’m going to give up my horses (they take up a big part of my time along with the garden) and it’s starting to pee me off, just a reminder folks it’s my husband whose ill, lost enough of my life already do you begrudge me the very few pleasures I have left? My horses and my garden are my coping mechanism they allow me to recharge my batteries and for a while get away from the never ending hospital hours, meds juggling and mood managing role that caring is. I think people forget you as an individual and just see the ill person and everything evolves around them and whilst it’s true getting them well is most important without a mentally well carer (YOU) that won’t happen.
Take care all, big hugs, hang on in there xx

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